
MaryannG
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I had something similar. My daughter had severe constipation, failure to thrive, poor growth, and a distended belly. Her first GI tested her and said it came back negative. Well mothers instinct told me to go to another one. Thank God I did because he looked at the bloodwork and low and behold they didn't test all the levels needed. I am looking at my script right now from the celiac center I go to and here is what they test:
Total IgA
Anti-Gliadin IgA and IgG
Tissue Trans Glutaminase IgA and IgG
Antienomyseal AG (not sure on these initals but that is what it looks like)
I would get the blood work and make sure they tested all of these. My gluten-free had the same thing happen to her, and now they are going to get the bloodwork redone. It is so scary that these doctors don't know what to test for.
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My understanding is that high anti-gliadin IgG is a sign of celiac if the person is IgA deficient. Do you have the link to the research where you found IgG suggested celiac in folks with normal IgA? I'd love to look at it. It's so hard to find everything in the literature.
Did they even test her overall IgA? You'll want to look for that along with the celiac panel when you get her medical records. If she's low IgA, then anti-gliadin IgG is definitely celiac. Otherwise, I'm not so sure. My understanding is that IgA is the antibody made in mucosa. Obviously the IgG means her immune system does recognize gluten.
All this said, kids are notoriously difficult do diagnose with bloodwork. Are they unwilling to biopsy based on the IgG? Her symptoms sure are celiac. If these docs are not willing to do the biopsy I agree that you might want another GI.
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My daughter is attending camp next week and they are having themed crafts made with food that they can eat. I called and got a list of things so I know what I should bring. Although I have no problem with her not being able to eat everything when we go out, at camp I'd really like her to be able to participate in this. They are making something with licorice. Can anyone think of something else I can use instead. It doesn't have to look the same but I would imagine it needs to be long so they can attach a marshmallow to it I'm told.
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For those that don't know, Bisquick is coming out with a gluten free version. It's already mnetioned on their website! I can't wait to try it! RIght now they are just saying the summer. The recipes look really good!
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I totally understand the frustration of people not wanting to get tested. My daughter has celiac and my husband and I got tested, which both came back negative. The GI dr says to get tested every 3-5 yrs. My other daugthers will also get tested every few years as well. We don't know which side of the family carries it, but my husband I each each have a gene for celiac but different ones. I have been telling my Mother in law that my nephew should get tested because I don't feel comfortable tell my sister in law. She thinks I'm crazy. My nephew is 7 and is 40 lbs!!! He is super short as well. She says that his dad was small as a kid but shot up later. Come on, its in the family. he should definitely get tested but I don't know how to get anyone to listen to me. He is at so many risks for things if he has it and doesn't know it. It is so frustrating. I could be wrong but I wish he would just get the test. The younger he is the better in my opinion to find out. Now his cousin on the other side of the family was just diagnosed with celiac. It was a random finding, he was just getting sick all the time and the dr gave him this test along with others and it came back positive. I wish I could figure out a way to talk to my sister in law about it but I also know his dad would say no way. UGH!
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After I was diagnosed I had both my boys tested. My oldest one has been tested twice. Both my parents were tested also. All were negative. My mom does not show any signs or symptoms, but my dad I think could benefit from the diet. MY youngest son is doing well too. My oldest son is contimplating trying the diet over summer break. I will then reintroduce him to gluten and see what happens. If nothing weird happens then I'll leave sleeping dogs lay for now. I do have a brother who refuses to get tested and has so many symptoms. He has sarcoidosis, constant rash, lactose intolerance, and other gi symptoms. He has no desire or care to get tested and give up his beloved "bread" and "beer". Just makes me want to smack him. He has three kids too and his oldest boy (16) has struggled with add and behavoir issues which he has really matured since puperty and is doing good now, and the youngest son (14) has really bad behavior problems for the past 4 years. He has taken a lighter and makes smiley faces on his arms. If you ask him why is just looks at you and says "I don't know, it looks neat." All three kids, including his oldest (19 year old daughter) has bouts of bloating and alot of "gas" that their mom just jokingly says can't be normal. I only have one living grandparent and he is 87. I did find out last summer at a family reuinion that a first cousin on my dad's mother's side has a daughter that is celiac. Also my dad's brother's (my uncle) great grandson was diagnosed celiac as a baby last year also. So it definatly is in the family.
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All the flours I've gotten from Arrowhead Mills have been contaminated. Sometimes barely enough to notice, while other times I'm miserable for days. So depending on sensitivity, you may be in for a surprise. I was using them for awhile before I figured out what was getting me.
By far this is the best flour mix I have tried:
Brown rice flour (extra finely ground) 2 cups I use Authentic foods (a 3 lb bad is $15 but so worth it)
potato starch NOT FLOUR 2/3 cup
Tapioca flour 1/3 cup
mix together and enjoy. It tastes almost identical to regular flour. I got this from Gluten Free baking classics by Annalise Roberts. An incredible cookbook. I've never tried any other brown rice flour but she recommends this one and it must be extra finely ground. I use Bobs Red Mill for the other products to add to the mix. I can say enough how delicous this flour is. You don't get the gritty taste that is in so many gluten-free flours. I buy the Authentic foods on amazon or I have them special order it at my natural foods store.
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I think I'd liike to try that! When you got more time, post again. Sounds yummy!
I recommend Namaste Cake Mix or Pamelas (my first choice is Namaste). I add choc chips just cuz I love chocolate. I use Betty Crocker smooth and creamy chocolate icing, or anything else right off the shelf that doesnt contain wheat. I don't buy gluten free labeled icing, I just check the ingredients. If you have time, I also recommend Gluten Free Baking Classics by Annalise Roberts. Her desserts are incredible to make. She has a choc cake to die for in their. When baking homemade I only bake with Authentic Foods flour (which I have to special order)and it is expensive but it is so worth it! I t really tastes like regular flour. I personally don't love the Betty crocker cake mix. It is ok, just a little gritty, but I don't find that with Namaste or Pamelas brand. I am thankful; to BC for making it though. Like I said, its not bad, its just not the best.
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Personally I would do the celiac panel but like someone siad your child will need to eat plenty of gluten or else you will get an innacurate result because you need gluten in your system to tell if you have celiac. The only reason I would do this is because you can grow out of an allergy but you can't of celiac so if there is any chance of growing out of it I'd wnat to know, but it's really your own personal choice. As for the genetic testing, my husband and I both got it done, but we didn't for our kids. It turns out we both have the gene, but neither have celiac atleast as of yet. There are 2 genes you can have, and we each have a different one. One of the genes has a 90% chance of getting it and the other has a 10% chance (this info is according to my dr at the celiac center at columbia prestbyterian in NYC). We didn't test the kids because knowing we each have a gene means the kids will most likely have the gene. These genes are also linked to diabetes and other things so it doesn't mean you will def get celiac. So it really depends on what you would do with this info to make the decision.
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Hmm. My son has gets really dry flaky skin behind his ears and skin build up in his arm pits. The only thing that clears it up is Elidel, so I assume it's eczema. A month ago, five months gluten free, I tried to take him off Elidel but his symptoms returned. He was tested for other allergies and all came back negative. I concerned that I'm missing something...
Jenny,
If you are think you might be giving your child gluten but are unsure, perhaps see a nutritionist. It really helped me! I made a food log by brand name of what my child ate and was able to determine the culprit! good luck!You can always post questionable foods on here and we can all help you determine if it is gluten free.
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Chex used to supposedly be gluten free, but they still contained malt. They took this out and the boxes that sayd Gluten Free on them are fine acording to the customer service at Chex. Incidentely, Vans waffles did the same thing and then they fixed the problem.
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I would go to a gastro. Most peds don't know much about celiac. In fact, when my daughter was first tested her first gastro read the results wrong, we went to another one because I didn't feel like I was gettin anywhere by just giving her plenty of fruits and veggies, so the second gastro caught the mistake. So not all gastros are even perfect! Even if she shows no signs, she will need to continue to get tested every few years, because this deisease can appear at any age. My daughter was diagnosed at 20 months, and in my opinion although it is very hard to tell such a young child that she can't eat something, it is much easier in the long run because all they know is gluten-free food. My daughter now at 3 asks if something is gluten-free and will say she can't eat it if its not. She has aquired the taste and my guess is she wouldn't even like regular food anymore! She even knows if the box or bag doesn't look like her typical food, she'll tell me she can't eat it. so diagnosing early was the best thing to happen to me in the long run!
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Hi, I'm new here, so thanks in advance for your help. My husband has celiac (manifests as dermatitis herpetiformis) and our son, who DOES eat gluten, is almost 18 months old. Unfortunately, he has been at the same weight for the last six months. As an infant he was in the 80th percentile in height at 75th in weight, but those numbers have been steadily decreasing, and based on the home weigh-in we conducted I'm sure that at his next checkup he's probably going to be below the 10th percentile in weight. However, other than his failure to gain weight, he is asymptomatic--he has no diarrhea or constipation, and he is a very active, social and happy child with a good appetite.
We are determined to have our son tested for celiac as soon as possible. I have been informing myself about the antibody and genetic tests, but the amount of information is a little overwhelming, and at the same time unhelpful! My questions boil down to these: (1) Can/Should we get these tests done through our pediatrician, who seems well-intentioned by not particularly informed about celiac, or do we need to take him to a pediatric gastroenterologist for these tests? (2) How accurate are the antibody tests on an 18-month old? (3) I have read that not all laboratories are created equal in terms of celiac testing. How do we make sure that our son's sample is sent to a lab that is most thorough?
Thanks in advance for your insights, folks!
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That is wonderful that your school is so good! Everyone should be aware that the law MANDATES that kids should be able to get a gluten free meal in school. This goes beyond a salad or rice cakes. It should be a hot meal and meet the nutritional requirements. At our celiac meeting a woman from DC came and spoke about the legislation that passed for this. Unfornately people don't know this and don't require it. I am so happy to hear how well your situation is, and when my daughter starts elementary school I hope mine is the same. I will definitely fight for it until I get it. Wonderful news to share though!
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I don't have kids in school anymore, but just wanted to say... WOW, am I impressed by the way your son's school is accommodating him. Those people (nutritionist and cafeteria peeps) deserve some kind of awards!! Maybe peeps here having to deal w/ these school issues can call your son's school and see how implementing a plan in their schools would be a great help!!
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The cupcake maker that is similiar to the easy bake oven offers gluten free mixes. At least, they did last Christmas when I was looking at them. All the icings too were gluten free.
can you get the cupcake maker mixes in a regular store?
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I thought I read somewhere a while ago that you can make or buy gluten free recipes for the easy bake oven cake mixes? Does anyone know anything about this?
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ABSOLUTELY get him tested! If it is in your family, it is a red flag, plus his symptoms are pretty common for celiacs. There are so many signs on celiac, that not growing isn't the only sign to look for. Some people show no signs at all, but it is a heriditary disease and so many people are misdiagnosed. If he doesn't get diagnosed and eats gluen, it will only do him harm. Please get him tested!
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I am looking for advice on how to handle gluten free at pre-school, although this probably applies to elementary school as well. I have started drafting a letter to list the food my daughter can't have and some typical snacks she can have. I just want to make sure the school doesn't mess up giving her snacks that aren't gluten-free. I plan on supplying her snacks, but this is a precaution. Any suggestions?
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I use Authentic Foods ultrafine brown rice flour. It's hard to find, I have special ordered it and I believe amazon might have it. I know Whole Foods does though. I blend it with a few other things which I can't think of right now but I can get you if you want to send me an email. It is the best I have found! It doesnt taste gritty at all and it very close to the real thing! So far all my baking has been excellent from it! I can't say enough about it! It's really easy and I make a whole bunch of it and store it in my fridge for whenever I need flour for anything. If I remember tomorrow I will grab the cookbook I got it from (also excellent) and post it.
Also, I LOVE Namaste brownies. I have served this and people have raved about them not knowing they were gluten-free! Pamelas is really good for cakes too but nothing is better than homemade!
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I can't believe your dr said she could cheat. That is insane. My dr says absolutely no gluten. Any little bit still destroys the intestines. Please don't listen to that dr. In my opinion you might want to shop around for a new one. I have been to 3 gastros. The first told me she didn't have celiac, it tunrs out she didn't look at the blood work correctly. The second was good but didn't know enought about celiac so referred me to a nutritionist as well. Then I found a celiac center and figure why not stick with the experts. Not all GI dr's know that much about celiac. My friends dr said don't eat bread, yeah ok! Like that is enough! Crazy!
Anyway, at the celiac center they said that they do the bloodwork after 6 months, BUT that it takes time for the levels to get where they should, and not to let it frustrate you. My daughters levels were not perfect. We'll see what they are in August when we do it again. Also, I thought my daguther was completely gluten-free but thne I kept finding secret sources of gluten. It took 6 mos to a year to finally get it right (or so I think...) Please feel free to send me a private message if you want to talk more about it. Good luck and don't get too frustrated. Also, I would suggest finidng a nutrionist that deals with celiac. Mine actually has celiac which really helps because she knows brands to trust as well!
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We just had my daughters party and we only had gluten-free food. I served tostitos, cheese doodles, potato chips, fruit and a gluten-free cake and gluten-free choc chip cookies. People couldn't believe everything was gluten-free and it was great! I didn't do the meal thing but if you want to you could make a pasta salad using schar pasta (I find this to be the most like regular pasta) or hotdogs and hamburgers. You could also do icepops if you wanted for dessert. Honestly, the kids just wanted to play! Good luck!
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My daughter was 19 months old when we got the upper endscopy done. I think it was worse on me than her! The hardest part was not giving her anything to eat or drink beforehand, but we had the test first thing in the morning. I think it is the best thing you can do for your child, and although it is very scary to put them under anesthesia so young, trust your drs and your child will do just fine. My daughter was her crazy self shortly after getting her home.
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What do you use for a breadcrumb replacement? The only thing decent I found so far was by Schar. I'm looking for something close to the regular breadcrumb taste. Any success in this area? I would prefer not to make my own, as I did see the Chex recipe post. I will try those, but it would be really nice to be able to just buy a decent brand!
Dealing With Celiac With A 4 Year Old
in Parents, Friends and Loved Ones of Celiacs
Posted
My 4 1/2 year old has been diagnosed with celiac since she was 18 months. This has turned into a blessing because it never bothered her that she couldn't eat gluten... until now. Up until this point she woudl say she can't have it beacuse it has gluten, or as if it has gluten in it. It's almost like she takes pride in things being gluten free. Recently I can tell she has been having a little harder time with this. It started off with little things like the other day one of her friends said she would have gluten free cupcakes at her b-day party and my daughter yelled "yay then I can eat them"! Ok so thats a good example. However lately she is getting jealous when my other non-celiac daughter eats off my husbands plate or is able to eat anything she wants at a party, yet she can't. She started asking why can her sister do it but not her. We gently explain because her belly doesn't hurt when she eats it but you can have XY and Z. Tonight broke my heart, which is prompting me to write this. We were at Burger King and my non-celiac daughter asked for chicken nuggets. My celiac daughter said she wanted them to. I said no you can have a cheeseburger (w/o the bun of course) and she got tears in her eyes. Then she got "mad" and looked away. I tried to talk to her but she just got upset and looked away. She wouldn't talk about it. I ended up telling her I'd make her nuggets when she got home. I usually don't try to initally say you can't have it because it has gluten, I try to say its not healthy, or it doesn't taste very good, or something else and then if she still insists then I say it has gluten. I do this because sometimes in life you just can't have everything and its not always because of gluten, but ultimately if she insists I tell her it has gluten. I can imagine how much it must stink to not be able to eat almost everything when everyone else can. I am so jealous of people who have kids that don't have this. I am looking for advice on how to empower our children to not get upset about this and try to teach them that being different is ok. I don't know how to explain to her that its ok to feel bad but not to let it define her at 4 years old. I thought I was doing a good job until now....